The story of this baby born with a bone disease will surely inspire you. Read on to learn more about four-month-old Jackson’s incredible birth and development journey.
When she was at 16 weeks of her pregnancy, Abby Storey and her husband, Jordan, held a fun gender reveal scan with their baby’s grandmothers. The couple had a three-year-old daughter Brooklyn, 3, and that day, they found out she was going to have a little brother.
Fast forward to 20 weeks, they went to the hospital for the anatomy scan. At first, everything seemed to be going well; Abby and Jordan saw their son’s cute profile and wiggly movements inside the womb. However, when they met with the physician assistant, they were told their baby’s limbs were measuring below the 5th percentile. They were referred to a maternal fetal medicine specialist for a more detailed scan. The couple felt nervous, but they continued to hope for good news in the next check-up.
Abby and Jordan went to the specialist a few days later, and the scan revealed several normal and abnormal findings that didn’t add up to a single diagnosis.
“He had shortened and curved long bones, no fractures, a normal-sized chest, an abnormally shaped skull, club feet, and correctly developing organs,” Abby wrote.
After discussing the scan findings, they were given a packet on Skeletal Dysplasia together with a referral for a geneticist. The contents of the handouts worried them; the word “lethal” was written all over it. Despite not knowing what lies ahead, they informed their doctors they weren’t discussing termination no matter what the prognosis.
At 28 weeks in utero, Jackson was officially diagnosed with Osteogenesis Imperfecta, a genetic disease that causes fragility in the bones. When they asked her doctor what the most likely outcome could be, she told them she couldn’t say.
“I just remember feeling like whether he lived or not, we had to be at peace,” Abby said. “If he needed comfort when he came out, that’s what we were going to give him. If he needed to fight, then we were going to fight with him.”
On March 17, Abby and Jordan held their breath as she was about to deliver Jackson via c-section. And when they heard his soft little cry, they were thrilled. He weighed 6 pounds and 12 ounces. The neonatologist told them the newborn was stable and breathing well on oxygen. Jackson was then transferred to the NICU.
Abby stayed for a few days at the hospital to recover and felt comforted knowing that she was near Jackson, even if she couldn’t hold him yet. Jordan would wheel her up to the NICU so she could see her baby, but they weren’t allowed to visit together due to visitor restrictions.
The early days post-birth involved discussing treatments with doctors, looking at x-rays, and pumping round the clock. It was only a week after he was born that Abby and Jordan were able to hold Jackson. They could only sit on a barstool at his bedside and lightly hold his hand or touch his feet. And after eight weeks, they finally went home.
“He really doesn’t cry very often unless he has a fracture — even with that, his demeanor is calm and sweet,” she said. “He knows how to move his body for you. You have to pick him up a certain way, very flat, broad … he will lift his shoulders so you can get underneath him. It’s wild how smart he is. You can see it in his eyes.”
Abby said their daughter Brooklyn has been enjoying life with her new sibling. Now, she is sharing their story, hoping to raise awareness and inspire other parents of babies born with Osteogenesis Imperfecta.
“There’s a lack of representation in that world. Disability is a wide spectrum, but specifically for OI,” she said.
Jackson is one strong baby boy for defying the odds! He is a true miracle baby. Share this story to celebrate his life and raise awareness about babies born with bone disabilities.
You can follow the adventures of the Storey family at the And So The Storey Begins Instagram page.